I was a bit agitated today. Overall, things went fine – Shannon went to school, Erin went to school, Dan worked, I worked… but, today was just hard. People irritated me. Things irritated me. I’m sad and mad at the same time.
Shannon is really processing what she's feeling and she's being more honest about what she wants – and what she doesn’t. When the day starts with a conversation on the way to school where your 12 year old tells you she doesn’t want to end up in a hospital bed, that she wants to pursue treatment but not at the expense of quality of life, that she wants to have the ability to do the things she loves until the day she dies, well, maybe that’s why I am sad and mad today. There are so many questions about what's ahead for her and us and there are no answers. It must play out over time. Tough, tough stuff…
A group of Shannon's friends had rubber bracelets made (think Livestrong). They are lime green - Shannon's favorite color - and they say "Shannon the Cannon" on one side, and "Fight Like A Girl" on the other. A pretty cool gesture of support and we are all sporting them proudly. Shannon was going to bring one for each of her buddies at her lunch table, but by the time she saw them, each of them was already wearing one!
Shannon came home early from school today with a little nausea, but it was easily fixed by getting something in her stomach. We joked about her snacking her way through the day to keep her tummy settled. Before she jumps in the car to head somewhere, she stops at the pantry first!
Healing went well – we were in and out in 15 minutes flat today. Not too much chit chat as everyone wanted to get on with things and get out and enjoy the sunshine. In the afternoon, Shannon, Dan, and Papa enjoyed the nice weather by getting out on the golf course and playing a few holes.
There will be days like today. I just have to accept that. This journey is hard and overwhelming and sometimes we struggle. But, sometimes we have enough strength to buoy the others. We take turns protecting. We take turns having perspective. Sometimes it's me, sometimes it's Dan, sometimes it's Erin, and often it's Shannon. It wasn't my turn today, but tomorrow is another chance to get it right.
April 28, 2011
Just back from our Thursday Mayo day with Shannon - today's special guest was Erin O'Hara! It was great to have her along for our appointments with Shannon's team. It is a bit draining to go from appt to appt to appt... But Shannon would rather pack them into one day and keep the rest of the week more normal with only a radiation/healing session to manage between school and golf.
Shannon is going along nicely considering she has a brain tumor. Her neurological exams were strong, her blood work was holding solid, very few side effects so far from chemo and radiation and she even gained a few pounds which made us all laugh. Basically, we are eating dessert with every meal. "Yes, I will have the poached eggs with some hash browns and fruit and how about an ice cream pie, thank you." It's unreal. You people are killin' us. Keep it up!
We continue to be grateful for many of the blessings in our lives. We talked about that with our social worker today; one of the ways to transition into restful sleep at night and stay stuck in the present is to end the day by recollecting what made us happy today. I like that.
OK, to all of our friends and family who enjoy the music of our lives; I need to insist you add the Jason Mraz record We Sing We Dance We Steal Things to your collection. The song Live High represents so much good to me right now - it's all about gratitude. I've played it about 50 times this week. Live high, live mighty, live righteously...takin' it easy...
Shannon is going along nicely considering she has a brain tumor. Her neurological exams were strong, her blood work was holding solid, very few side effects so far from chemo and radiation and she even gained a few pounds which made us all laugh. Basically, we are eating dessert with every meal. "Yes, I will have the poached eggs with some hash browns and fruit and how about an ice cream pie, thank you." It's unreal. You people are killin' us. Keep it up!
We continue to be grateful for many of the blessings in our lives. We talked about that with our social worker today; one of the ways to transition into restful sleep at night and stay stuck in the present is to end the day by recollecting what made us happy today. I like that.
OK, to all of our friends and family who enjoy the music of our lives; I need to insist you add the Jason Mraz record We Sing We Dance We Steal Things to your collection. The song Live High represents so much good to me right now - it's all about gratitude. I've played it about 50 times this week. Live high, live mighty, live righteously...takin' it easy...
Wednesday Evening
As Shannon’s friend Samantha would say, people’s generosity is AH-MAY-ZIN. All this support gives us strength and makes us want to continue this journey with as much grace as we can muster.
But, there are moments when grace is hard to come by. Even the perpetually smiling Shannon has her moments. Last night, Shannon’s mind wandered to the what if: What if I lose my coordination? What if it gets harder to be a good student? What if this is the best I ever feel again? Her tears came, and I didn’t have any answers. And I’m usually in charge of having all the answers - just ask my husband!
This morning Shannon said it felt good to cry, but it feels better to smile and laugh with her friends. She had a new normal day of school, healing, and golf practice. Tonight another wonderful meal was delivered and then some TV time watching the Twins and playoff hockey. We're in good spirits tonight.
Dan's parents arrived safely back in Minnesota. Dan had a brief conversation with them and they are exhausted from their trip and shocked about Shannon. After such a long day, it was hard for them to verbalize their emotions over the phone. Hopefully we'll find a way to get together with them in the next few days.
Tomorrow is the weekly day of appointments. Erin is going to join us so she can put some faces with names when we talk about Dr. so-and-so, Charlton Desk R, etc… This is her fight, too.
On the agenda for Thursday: weekly blood draw, weekly hematology/oncology appointment, an hour with the social worker, daily radiation, and our weekly radiation/oncology appointment. Also, we have two additional appointments tomorrow. Once a month, Shannon will do an infusion therapy to protect her lungs from infection/pneumonia because the immune system is compromised by the chemo. We also have a one time appointment with a Radiation Oncology Educator to give us information about managing side effects of the radiation.
So, by my count, we have appointments at: 8:00, 8:30, 9:30, 10:00, 1:00, 1:30, and 2:30. Erin’s going to wish she had just gone to school instead!
Week two, here we come.
But, there are moments when grace is hard to come by. Even the perpetually smiling Shannon has her moments. Last night, Shannon’s mind wandered to the what if: What if I lose my coordination? What if it gets harder to be a good student? What if this is the best I ever feel again? Her tears came, and I didn’t have any answers. And I’m usually in charge of having all the answers - just ask my husband!
This morning Shannon said it felt good to cry, but it feels better to smile and laugh with her friends. She had a new normal day of school, healing, and golf practice. Tonight another wonderful meal was delivered and then some TV time watching the Twins and playoff hockey. We're in good spirits tonight.
Dan's parents arrived safely back in Minnesota. Dan had a brief conversation with them and they are exhausted from their trip and shocked about Shannon. After such a long day, it was hard for them to verbalize their emotions over the phone. Hopefully we'll find a way to get together with them in the next few days.
Tomorrow is the weekly day of appointments. Erin is going to join us so she can put some faces with names when we talk about Dr. so-and-so, Charlton Desk R, etc… This is her fight, too.
On the agenda for Thursday: weekly blood draw, weekly hematology/oncology appointment, an hour with the social worker, daily radiation, and our weekly radiation/oncology appointment. Also, we have two additional appointments tomorrow. Once a month, Shannon will do an infusion therapy to protect her lungs from infection/pneumonia because the immune system is compromised by the chemo. We also have a one time appointment with a Radiation Oncology Educator to give us information about managing side effects of the radiation.
So, by my count, we have appointments at: 8:00, 8:30, 9:30, 10:00, 1:00, 1:30, and 2:30. Erin’s going to wish she had just gone to school instead!
Week two, here we come.
Temporary Housing Secured!
I am compelled to jump on here and post so that people know that my parents are all set on the housing front. Since I posted that they were looking for a place to live, we've had 6 different offers to help! People are so kind. Grandma and Papa’s old neighbors arranged a housing option that is ideal. OK, as ideal as it can be in this situation. As I write, they are already moving into their new “summer vacation home” – an empty townhome on their old street just across the golf course from us. Just a short walk or bike ride away... that is, if it ever stops raining! Thanks to all of you who offered to help.
April 27, 2011
Good Morning from the home of the Indy 500, the Indianapolis Colts, the Butler Bulldogs and the world-famous Indy O'Hara's.
I need to take a second this morning to share about my employment situation. What kind of a company would send a sad dad on the road - away from his wounded and healing family? I just want to make it clear that my mini-trip to Indianapolis was my call alone. In fact, my manager and the big boss have told me to do what I have to do for my girls. If that means working from home, not working at all or traveling as needed, whatever.
Add the good folks at EFS Transportation Services, Memphis TN to the growing list of amazing blessings in the lives of Erin, Shannon, Jen and Dan O'Hara.
About 6 weeks ago I was working in Indiana and added a couple new opportunities to my pipeline that required at least one more face-to-face meeting. These are the kinds of opportunities that will keep a sales guy's direct deposit hitting on the 15th and 30th. So, that's why I am out here this week. The airfare was booked and the appointments set weeks in advance.
That's how it works for sales guy; you make a connection and you pursue the connection until it dries up. If I've learned anything over my 12 years in sales its that relationships sell deals. Relationships are really hard to establish and grow if you are in the fetal position in the corner of your home office. So I'm out here selling. Just a couple really meaty appointments. My cold calls and prospecting can wait. I'm pretty sure I will not be out selling every week while Shannon's is in treatment...or healing.
Van Morrison, Golden Autumn Day...and I'm pretending that it's paradise...on a golden autumn day...
So I will be back on the ground in Rochester today by about 3p central - plenty of time for the Fireballs practice! The girls barely missed me - I saw in the forecast that Shannon's golf meet was going to be rained out again because spring is MIA - so I made my trip. But that's about to change. I sense it. Jet stream a changin'. It's comin' people!
So, I just wanted to tell you about my work situation which is really great. I'm out here for a quick trip because that is what I do and that is what my family needs me to do. Plus, I think I might have actually sold something this week!
I checked in to my hotel last night and took a visit from several of my Indy O cousins and I was able to be with family. That was great. Of course, they are just crushed by our news - we are big family people us O'Hara's. Big giant hearts - hell we cry at a good Alpo commercial. The Indy O's are a family of 11 kids...I am the baby of 9...you get the picture. Our other O'Hara cousins are part of family of 13 kids. Family reunion's are held at major venues.
Speaking of, my Mom and Dad return to Minneapolis from Ireland tonight. They will hear about Shannon's tumor for the first time tonight at around 8pm. Pray for Ed and Tess to have strength.
I need to take a second this morning to share about my employment situation. What kind of a company would send a sad dad on the road - away from his wounded and healing family? I just want to make it clear that my mini-trip to Indianapolis was my call alone. In fact, my manager and the big boss have told me to do what I have to do for my girls. If that means working from home, not working at all or traveling as needed, whatever.
Add the good folks at EFS Transportation Services, Memphis TN to the growing list of amazing blessings in the lives of Erin, Shannon, Jen and Dan O'Hara.
About 6 weeks ago I was working in Indiana and added a couple new opportunities to my pipeline that required at least one more face-to-face meeting. These are the kinds of opportunities that will keep a sales guy's direct deposit hitting on the 15th and 30th. So, that's why I am out here this week. The airfare was booked and the appointments set weeks in advance.
That's how it works for sales guy; you make a connection and you pursue the connection until it dries up. If I've learned anything over my 12 years in sales its that relationships sell deals. Relationships are really hard to establish and grow if you are in the fetal position in the corner of your home office. So I'm out here selling. Just a couple really meaty appointments. My cold calls and prospecting can wait. I'm pretty sure I will not be out selling every week while Shannon's is in treatment...or healing.
Van Morrison, Golden Autumn Day...and I'm pretending that it's paradise...on a golden autumn day...
So I will be back on the ground in Rochester today by about 3p central - plenty of time for the Fireballs practice! The girls barely missed me - I saw in the forecast that Shannon's golf meet was going to be rained out again because spring is MIA - so I made my trip. But that's about to change. I sense it. Jet stream a changin'. It's comin' people!
So, I just wanted to tell you about my work situation which is really great. I'm out here for a quick trip because that is what I do and that is what my family needs me to do. Plus, I think I might have actually sold something this week!
I checked in to my hotel last night and took a visit from several of my Indy O cousins and I was able to be with family. That was great. Of course, they are just crushed by our news - we are big family people us O'Hara's. Big giant hearts - hell we cry at a good Alpo commercial. The Indy O's are a family of 11 kids...I am the baby of 9...you get the picture. Our other O'Hara cousins are part of family of 13 kids. Family reunion's are held at major venues.
Speaking of, my Mom and Dad return to Minneapolis from Ireland tonight. They will hear about Shannon's tumor for the first time tonight at around 8pm. Pray for Ed and Tess to have strength.
Tuesday Afternoon - April 26, 2011
Shannon is just this life force right now – brightening up people’s days all around Desk R at the Charlton Building. They love her! Grandma and Papa tagged along to treatment today. Oh wait, Shannon told me she doesn’t like the word "treatment". She prefers we call it “healing” instead. So, Grandma and Papa tagged along to healing today and met the team that is working with Shannon every day. They saw the room where the radiation is delivered and even the radiation mask with the built in smile. They also met Shanan the Scheduler who said with great enthusiasm, "It's Shannon the Cannon!"
We consulted with Dr. Laack briefly today and Shannon explained some of the symptoms that are causing her sleepless nights and early mornings. We are going to taper off the steroids a bit these next three days before our next appointment with Dr. Laack and see if that helps.
The golf meet was canceled again by crummy weather. Coach Myhro plans to give Shannon the opportunity to play next Tuesday now. I’m hoping it works out one of these times!
Dan managed to get on an airplane and go to work this morning. As we’ve said here before, life must go on. I am hoping his day is full of activity and his mind is busy and not wandering to thoughts of “missing out” on the “healing” here at home.
I’m also hoping today is a better day for Erin. She was sad yesterday. She is caught in this tornado that is our life right now and she has even less control over what is going on than the rest of us. So, I’m hoping she comes home this afternoon and reports of a normal day at school.
I seem to be doing a lot of hoping today... hope is good ...
We consulted with Dr. Laack briefly today and Shannon explained some of the symptoms that are causing her sleepless nights and early mornings. We are going to taper off the steroids a bit these next three days before our next appointment with Dr. Laack and see if that helps.
The golf meet was canceled again by crummy weather. Coach Myhro plans to give Shannon the opportunity to play next Tuesday now. I’m hoping it works out one of these times!
Dan managed to get on an airplane and go to work this morning. As we’ve said here before, life must go on. I am hoping his day is full of activity and his mind is busy and not wandering to thoughts of “missing out” on the “healing” here at home.
I’m also hoping today is a better day for Erin. She was sad yesterday. She is caught in this tornado that is our life right now and she has even less control over what is going on than the rest of us. So, I’m hoping she comes home this afternoon and reports of a normal day at school.
I seem to be doing a lot of hoping today... hope is good ...
Protecting My Young
Who knew I would not only be Shannon's mother, but also her publicist? At this time, there will be no story on KTTC. No story in the Post Bulletin either. Not now, not yet. In a year, hopefully Shannon is still on the Mayo girls golf team and the support from her teamates has helped her to persevere, and then maybe there's a story to tell. For all of us. But, playing in a JV match tomorrow is a personal gift from Coach Myhro and his team to Shannon to lift her spirits. And she is excited and it is bringing her joy. Now, about that weather forecast...
My dad arrived today. He's drove a car back from my parent's home in Nevada so he and my mom will have their own wheels from here on out. 1600 plus miles in two and a half days. Next on the agenda is finding them a temporary Rochester home. They lived here until 4 years ago when they retired out West. Now they can't imagine not being here. And we need them.
I've lived in Rochester my entire life (except for the college years) and I've never needed the Mayo Clinic. Sure, my mom worked as a nurse, so it helped pay the bills in our house. And sure, we delivered our babies at Methodist and treated our ear infections and strep throats through the Family Medicine department, but we never needed it. How different would our lives be if we had to uproot everything to pursue this kind of treatment? As we walk the halls at the clinic, we see people from all over. And here we are, living in our own house, shopping at our familiar grocery store, going to our jobs. (Yes, I actually managed to teach tennis for a whole 90 minutes today!) Shannon goes to school, gets picked up at 12:35pm and is done with radiation and home by 1:30pm. Not every kid being treated at Mayo has that. For that, we are grateful.
Another great meal appeared at our door tonight. Grateful for that, too.
A few people have asked us to continue to share our musical selections. On this Monday, I've gone with an all Jack Johnson playlist. Today's favorite for me - All At Once:
All at once, The world can overwhelm me
There's almost nothin' that you could tell me
That could ease my mind
Which way will you run
When it's always all around you
And the feelin' lost and found you again
A feelin' that we have no control
My dad arrived today. He's drove a car back from my parent's home in Nevada so he and my mom will have their own wheels from here on out. 1600 plus miles in two and a half days. Next on the agenda is finding them a temporary Rochester home. They lived here until 4 years ago when they retired out West. Now they can't imagine not being here. And we need them.
I've lived in Rochester my entire life (except for the college years) and I've never needed the Mayo Clinic. Sure, my mom worked as a nurse, so it helped pay the bills in our house. And sure, we delivered our babies at Methodist and treated our ear infections and strep throats through the Family Medicine department, but we never needed it. How different would our lives be if we had to uproot everything to pursue this kind of treatment? As we walk the halls at the clinic, we see people from all over. And here we are, living in our own house, shopping at our familiar grocery store, going to our jobs. (Yes, I actually managed to teach tennis for a whole 90 minutes today!) Shannon goes to school, gets picked up at 12:35pm and is done with radiation and home by 1:30pm. Not every kid being treated at Mayo has that. For that, we are grateful.
Another great meal appeared at our door tonight. Grateful for that, too.
A few people have asked us to continue to share our musical selections. On this Monday, I've gone with an all Jack Johnson playlist. Today's favorite for me - All At Once:
All at once, The world can overwhelm me
There's almost nothin' that you could tell me
That could ease my mind
Which way will you run
When it's always all around you
And the feelin' lost and found you again
A feelin' that we have no control
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